This article introduces the creative writing component of the Young Women's Program (YWP), a comprehensive health and wellness program that serves young women, ages 14-21, with physical disabilities. The YWP is a part of the Initiative for Women with Disabilities (IWD), a hospital-based center in New York City serving women across the life span with physical disabilities/conditions. The goal of the YWP, established in 2006, is to help young women develop a better sense of self and respect and honor their bodies by adopting healthy lifestyles. The creative writing workshop of the YWP, True Story Project: I Am Heard (TSP) focuses on helping select program participants find their voices and share their stories through writing. This article describes the design, content and purpose of TSP, shares several of the young women's narratives, and includes a reflective analysis by the young women and facilitators of their experiences in the program and its impact on their lives.
Introduction
Transition from Adolescence to Adulthood
The transition from adolescence to adulthood is an important developmental process in the life course of an individual. Young women with physical disabilities often face additional challenges in making this transition. Specific areas of change are school to college/work, pediatric to adult health care, and being dependent on family to living independently (van Campen & Iedema, 2007; Stewart & Bhagwanjee, 1999). Youth with disabilities often report personal barriers to making a successful transition such as low expectations of self and physical limitations but environmental barriers are viewed as the greatest roadblocks (National Center for Youth with Disabilities, 1995; Scal, Evans, Blotzis et al, 1999). Lack of physical access, such as the need for special transportation or having physical difficulty accessing a friend's home, reduce the ability of young women to spontaneously participate in peer activities (Antle, 2004). Most importantly, attitudinal barriers held by family members, peers, teachers and other professionals play a big role in limiting the life opportunities of this group. Despite efforts to minimize these socio cultural and institutional inequalities through various forms of legislation, namely the American with Disabilities Act of 1990 (ADA) and the ADA Amendments Act of 2009 (US Department of Justice), they still exist today. Young females with physical disabilities often deal with the added stigma of body image and body ideal which is often perpetuated by the media and their peers (Dunkley, Wertheim & Paxton, 2001).
The result of these obstacles is significant. A lack of socialization experiences and exposure to role models and mentors can result in isolation, depression, and restricted career aspirations and opportunities (Tate, Roller, Riley, 2001). Adolescents with physical disabilities have been described as being more dependent physically, behaviorally, and socially on parents and pediatricians as compared to adolescents without disabilities (Blum, Resnick, Nelson & St. Germaine, 1991; Bryan & Herjanic, 1980). This dependence can be attributed to the role families play in sheltering young women with disabilities (National Information Center for Children and Youth with Disabilities, 1990; Nelson, Ruch, Jackson, Bloom & Part, 1992). Consequently, these young women may not become independent in sync with other teenagers. Unwittingly, parents may fail to introduce their daughters to the resources available to help them as they develop. Physicians can also view these young women as asexual and infantilize them well into adulthood, although many such women have aspirations of marriage and motherhood (Piotrowski & Snell, 2007).
During the last 20 years our focus has started to shift away from the idea that we should be protective of adolescents with disabilities toward assisting them in learning self-help strategies that promote their self-competence and functional capabilities (Powers, Turner, Ellison, Matuszewski, Wilson, Philips, et al., 2001). The literature on persons with disabilities over the past two decades has identified the need for programs and services that can make life for persons with disabilities more fulfilling professionally and personally, primarily by providing empowering experiences that promote self-determination and self-competence.
The Young Women's Program, True Story Project: I Am Heard
The Young Women's Program (YWP) is aligned with this self-help philosophy and is designed to promote the "self-determination" (Powers, Wilson, Matuszewski, Phillips, Rein, Schumacher, et al., 1996) of its participants by exposing them to learning and empowering experiences in individual and group settings.
The YWP, established in 2006, is the only program of its kind in the New York City area. It serves to assist young women, ages 14-21, with physical disabilities, to lead healthy lifestyles by providing a carefully planned curriculum of group classes, workshops, and individual health and wellness planning. Its main objectives are: to teach participants concepts of health and wellness; to provide information and referrals to health and wellness resources; and to teach participants how to access appropriate medical care, both primary and gynecological. The YWP is a program within the Initiative for Women with Disabilities (IWD), a hospital-based center serving women with physical disabilities/conditions, which offers accessible gynecology, primary care, physical therapy, nutrition consultations, exercise/fitness classes, and wellness and social work services. It is about women, for women and run by women. The YWP collaborated with The Visible Theatre, Inc., which was founded in 2000, to create its creative writing workshop called A True Story Project: I Am Heard (TSP). It creates opportunities where a diverse community of artists expresses their authentic voice through process and performance, with the belief that cultivating presence and celebrating our deepest humanity will empower and transform us (Visible Theatre, 2009).
Some young women with physical disabilities have difficulty expressing themselves, primarily due to a lack of self-confidence and self-competence simply because they have not had opportunities to do so in a comfortable, empowering setting. TSP's experiential approach of connecting young women with disabilities to each other and to facilitators/mentors through writing and sharing stories in a safe and nurturing environment, serves to foster this positive development.
Expressive Arts and Its Role
"Expressive arts" (Creadick, 1985) is a term used to emphasize the processes within many art forms including creative writing. Although the power of writing has been widely recognized by diverse groups of professionals from health care providers to poets, its use in group work has received scant attention (Parr, Haberstroch, & Kottler, 2000). Its therapeutic value especially for persons with disabilities is supported in the literature although in the past two decades there has been a lack of presence on this topic. The production of art can provide this group with a sense of competence and mastery, which in turn builds self-esteem (DiCowden, 1987; Erickson, 1979; Omizo & Omizo, 1988). Group arts experiences can have additional benefits by providing needed stimulation, socialization and communication for individuals with disabilities who are isolated from their peers (Canner Hume & Hitti, 1988; Clements & Clements, 1984; DiCowden, 1987, Lynch & Chosa, 1996).
In their 2003 study, Nosek and colleagues learned about the importance of social integration for women with physical disabilities and the numerous attitudinal and environmental barriers that prevent it. The social environment in which women with disabilities live is primarily a hostile one, transmitting stereotypes that have existed for millennia, resulting in stigmatization and exclusion. The effect on sense of self of women with disabilities compared to those without disabilities is clearly evident. Adolescents as a group tend to not have friends outside the school setting and have an increased orientation towards adults over peers (Stevens, Steele, Jutai, Kalnins & Bortolussi, 1996). Programs that help young persons with disabilities become comfortable with their differences and explore opportunities to understand their self perceptions and the way their disability experience affects their perceptions are important to enhance overall sense of self (Antle, 2004). A paradigm shift in group settings, emphasizing the active participation/collaboration of persons with disabilities and diminishing the role of the leader can create opportunities for self-reliance and empowerment for this population (Stewart & Bhagwanjee, 1999). A study by Lynch and Chosa (1996) indicated that participation in group-oriented community-based expressive arts programming for individuals with disabilities is related to perceived enhancement of social and communication skills. The expressive arts activity is focused on the process of creating art rather than individual pursuits of self-expression resulting in a product.
TSP considers these recommendations in the literature. It was developed to create a safe place after school, for young women with physical disabilities to take an active role in their journey of self-discovery through writing and sharing their thoughts, feelings and insights with their peers and mentors.
PROGRAM DESIGN: Description
The development of TSP began in spring 2009 when a number of artists with and without disabilities from Visible Theatre, Inc. came to a YWP session and performed monologues of their original work. They led a group discussion with the young women about their experiences being artists with and without disabilities, writing and performing their own material. This experience had a profound impact on many of the YWP participants. Later, many expressed an interest in telling their own story and shared that they currently write poetry, short stories and journal.
Based on this positive experience the YWP coordinator and one of the lead Visible Theatre artists decided to pilot a creative writing workshop for interested YWP participants called True Story Project: I Am Heard. As its name represents, its goal is to provide a safe space for participants to write freely and truly about their selves and life experiences and share and listen with each other. The workshop uses Jack Kerouac's (1959) spontaneous prose method as a guide which includes a list of thirty essential beliefs and techniques for modern prose. These include:
- being submissive to everything, open, listening;
- writing what you want bottomless from bottom of the mind;
- removing literary, grammatical and syntactical inhibition;
- having no fear or shame in the dignity of your experience, language and knowledge;
- writing in recollection and amazement of yourself; and
- keeping scribbled, secret notebooks and wild typewritten pages.
The goals of each workshop are simple. Each participant writes freely about her life experiences based on the theme True Story Project: I Am Heard; gains knowledge of writing and presenting including relaxation, voice work and active storytelling; gains experience and confidence in expressing her ideas, thoughts and feelings.
PROGRAM DESIGN: Participants
The participants are all YWP members, primarily high school students, 14-21 years of age. The majority resides within the five boroughs of New York City and use the public para transit system for transportation to/from the program. The young women come from diverse ethnic, racial and socioeconomic backgrounds. The nature of the young women's disabilities is neuromuscular (e.g. cerebral palsy, spina bifida). The young women use a variety of modalities for independent mobility including motorized and manual wheelchairs. All participants are cognitively intact and can follow directions. The majority work independently unless they need assistance due to an upper extremity weakness such as spasticity or inability to turn a page or grip a writing implement. There is one adult volunteer from the YWP who participates fully in each session and is available to the young women requiring assistance.
The participants self-select to be part of TSP. A screening is conducted by the YWP coordinator, usually with the prospective participant or parent (legal guardian), to discuss the workshop objectives, required commitment, the prospective participant's level of functioning, her interest and the level of accommodations she will require. Prior writing experience is not required, only an interest in developing one's writing and sharing with the group.
The workshops are led in partnership by YWP coordinator and facilitator/group mentor from Visible Theatre, Inc. Several other artists from Visible Theatre, Inc. serve as facilitators/group mentors and lead specific workshop components during sessions as well. This allows for a variety of facilitation styles, personalities and allows the young women to be mentored by different adult women. The facilitators/group mentors use two texts for guidance (Johnstone, 1987; Spolin, 1986) as well as their own experiences in developing the curriculum.
PROGRAM DESIGN: Methods
The pilot workshop consisted of six, 1.5 hour consecutive weekly sessions and later workshops expanded to eight, 2 hour consecutive weekly sessions. During the initial sessions, the young women are provided with instruction and expectations for being in TSP series. These include being prompt to each session, respecting each individual's writing style and progress and writing assignments outside of the sessions. Contact information is shared so that participants can email or telephone in their work during the week to their facilitator/group mentor. The advances in and improved access to telecommunication technology enable the majority of the young women to use regular and cellular telephones and computers as do their able-bodied peers. Each participant is provided with a pen and a hard covered notebook. The notebooks serve as a central, safe space for the young women to write their thoughts and feelings. They use them as diaries/journals of their lives and anything can be written in them. Notebooks are not censored or checked for spelling or grammar.
The facilitators/group mentors are made aware of any initial physical issues a participant has in terms of alternate augmentative communication styles (i.e. note taker, voice recognition). As these workshops deal with the inner thoughts, feelings and experiences of the young women, it is important to maintain the boundary between the workshop's purpose (finding one's voice and expressing it through creative writing and speaking) and individual/group psychotherapy. The IWD social worker is available for any issues.
PROGRAM DESIGN: Initial Workshop Exercises
Breathing/Relaxation
At the opening of each session the facilitator/group mentor begins with a breathing/relaxation exercise to facilitate creativity and balance. She introduces the concept of being aware of when one breathes and when one does not. She provides examples of how to recognize one's breathing. The facilitator/group mentor demonstrates diaphragmatic breathing and the participants try it so they can feel the difference when taking deep, long breaths. She has the participants sit in a quiet area of the room with ample space and proceeds to go through breath realization and relaxation exercises in order to leave the activities of the day outside of the creative space. They involve closing one's eyes, doing head and shoulder exercises and taking deep, long breaths to get centered. Participants are reminded that there is no right or wrong during these exercises as it is a practice and a discipline.
Breathing is physically compromised in some of the participants due to their disability and for others it becomes a conscious and labored process due to negative thoughts/feelings. These breathing exercises at the beginning of each session are designed to facilitate breathing to create a relaxed, comfortable space where the sharing and creativity can flourish.
Theatre-Based
Theatre activities are then introduced by the facilitators/group mentors as a way to help the young women relax and get accustomed to participating in a fun, non-pressured way. Exercises include facial expressions and exaggerations and making sounds instead of using words to express emotions. The premise of the acting exercises is to get the young women out of their comfort zone and begin building trust with each other. It allows them to laugh and be spontaneous in a structured and safe way. These activities create a bridge to the writing component of TSP.
Confronting Judgment
Initial sessions are designed to deal with judgment as persons with disabilities, whether acquired or congenital have perceived stereotypes within themselves and their community. The TSP works to dispel these notions through the art and power of storytelling. The participants first listen to the monologues of veteran storytellers from Visible Theatre, Inc. related to judgment to gain a better understanding of what storytelling is about and how reactions are shared. Hearing these monologues makes the participants realize that they share some of the same thoughts, feelings and experiences as the group leaders/mentors and makes them feel more comfortable to share their own stories. The human experience although unique to each individual is still a shared one.
The following narratives by two young women focus on the inherent judgment and lack of understanding by peers and family of their disabilities. They describe how this elicited feelings of anger, made them feel like outsiders and affected their ability to participate fully. In SJ's narrative, the theme also emerges of having to explain herself repeatedly in an effort to be understood in different venues. This feeling of having to prove oneself versus just being rings true for many of the young women. Both writers describe how through maturity and life experience, they discover that what is ultimately most important is hearing their own voices and accepting themselves for who they are.
Sometimes people are very mean because they judge others without even knowing them. In this society I feel like everybody judges me, even my own family. I feel that the world sees me differently because of my disability…I think I too, judge people sometimes but them looking at me like this is different; it is not my fault to be like this. Now I realize that I don't really care anymore what they think. I will just be me. If I want others to accept me the way I am I have to accept myself.
-S.M.
Everyone in grammar school knew me so I didn't need to explain my disability. But every time I left grammar school I felt that I was seen as someone else-like some type of alien…When I entered high school once I had to start all over again-making friends and making sure people understood me for who I am. The same thing happened in college but this time I was already used to it. I waited for people to look, stare and point at me but nobody did-surprising and weird but I liked that. However, still when I leave to another place where no one knows me I feel uncertain about myself. I feel that I am not heard. People walk past me because I walk slow, they point at me and talk about me. I realize now that I can hear myself on my own.
-S.J.
PROGRAM DESIGN: Writing Exercises
Writing time occurs in each session after the breathing/relaxation exercises. Initially specific writing exercises are introduced to stimulate thoughts and feelings and assist the young women with their writing (selecting a gemstone from a box, imagining a favorite space, listening to different music). Future sessions include more free writing time centered around the theme "I am Heard" (part of the workshop series title). They are responsible for creating the genre, setting, subject matter, characters and dialogue. It can be based on an actual experience or fictional. This exercise is the starting point of future TSP workshops as the goal is to have the young women come back and continue to work on their writing projects. The ultimate goal is to have a salon reading performance of their work in front of a peer audience.
If the participants experience "writer's block" they are instructed to keep writing the last word on the page over and over again as this physical and mental act could facilitate further writing. The young women are encouraged to share their writing with the group by reading aloud and it is made clear that everyone will share whether it is one sentence or one page. These exercises begin to build group trust and decrease the young women's fear of speaking in public and sharing intimate details of their truths. At the end of each session the participants are reminded to email/contact the facilitator/group mentor with no less than a paragraph of writing during the week. This helps the young women stay focused on the discipline of writing outside of the sessions and helps foster the continuity from session to session.
Writing Styles/Themes
The writing styles that appear in TSP are:
- Use of nonfictional writing based on life experiences using imaginative features;
- Use of prose in first person (with some variety: poetry, dialogue, screenplay)
Various themes emerged from the young women's narratives:
- Being automatically judged by society based on their disability and not who they are as young women;
- Feeling resentful, sad, lonely and angry about this judgment;
- Finding the vehicles by which to discover their own voices and then to be heard, understood and accepted by others;
- Being true to themselves-recognizing their own strengths and abilities (to adapt and rise above their struggles) and achieve a higher sense of self;
- Being independent and making their future aspirations a reality: partner, career, home
- The importance of nurturing role models that can help them to gain self confidence and independence
The following excerpts from participants' writing encompass these themes:
…this music reminds me of today's generation with young people judging one another; not meeting people and giving them a chance. But if everyone put their hands together-uniting all races, ethnicities and cultures-we as people can 'peace it out' and change the world while jamming to the beat.
-S.J.
SJ's prose demonstrates how music can elicit different spontaneous thoughts and feelings. The writer makes a connection between the music and the younger generation which she is part of, and how there is not a universal acceptance of difference. Again, the perception of judgment by others, which the young women with disabilities often express, is cited.
My family and I went on vacation where there was a beautiful river and I decided to go swimming. On the bottom I saw a beautiful rock and I decided to take it with me. After I got out of the river I looked at its unique details and showed it to everyone. The rock was orange and I had never seen a rock like this before. After that day my life changed. I decided to collect rocks but even after I had many, none were like this first rock… The powerful orange rock was my life; I took it everywhere with me. One day in my bedroom I asked myself what is it about this rock that makes me so crazy and made me want to collect other rocks when I never had an interest before. I went back in time and remembered that the day I found this rock I had a wonderful time with my family like never before. So this rock represents the memory of that special day. This rock represents love, love like I never experienced before.
-S.M.
This excerpt illustrates the importance of symbolism in writing. Through this "powerful, orange rock" SM is able to convey strong feelings of beauty, power, and love. These are important life components that the young women often express the desire to have. Many of the young women express that they do not experience unconditional love from their families and the author realizes the uniqueness of this in her regular life which is what makes this occasion so special to her. Water is often a medium that the young women use in their writing as it represents a soothing, cool equalizer where the young women's disabilities seem to vanish—they are buoyant and can physically move more freely than they can on land. From the young women's experiences there seems to be a polarity that exists—either an overly present, controlling, stifling family or one that is mostly absent physically and emotionally.
In this next narrative BE expresses the importance of the influence of supportive, caring, people in her life (in this case, a three generation matriarchy) and how they helped shape her values and identity.
I am sitting in the living room of my great grandmother's house talking to her about the two women who came before me-my grandmother and mother. My great grandmother said that I was blessed to be influenced by three queens and you were our princess. Sometimes in certain situations there would be three different ways to solve issues according to these three women in my life. My great grandma always said, "take a deep breath and think"; my grandma always says, "be honest and truthful"; and my mom says, " say what you have to say." Three queens teaching a princess.
-B.E.
Conversations with Alan
Alan comes close to me and sits down on the bed…I can feel the heat from his body as it encompasses me. In his own quiet way he shows that he is there for me…He belongs to no one else… He gives me what I am not able to freely give myself…love.
…In school I try to be on autopilot for as long as I can throughout the day. As I sit in class my mind starts to wander…I look to make sure that no one is watching me and I slip out of there to the place I know Alan will be waiting for me. There, when I walk in, it is quiet…As I walk slowly to where he is, he turns to look up at me with his smile…
As I see him looking into my eyes I feel that he is taking inventory of my soul…Next to him is where I feel safe. No need for masks or unspoken truths…He can see all my scars, that in the real world, I would work so hard to keep hidden.
My whole life has been a battle field but I have never had a weapon… I try to move and dodge the bullets and the knives…but they can find me wherever I try to hide. As I sit there I feel lonely. Seeing this Alan motions for me to come over to him…This is the moment where I verbalize and place words to my emotions.
Why? It is the operative question I have never been able to find an answer to. I recite my list of why's and each one is more painful and traumatic than the previous. Why was I born this way? Why was I born at all?… Why is it that everywhere I go I notice people looking, judging me? Why is it that I feel like I have to work five times harder than everyone else to achieve the same thing? …Why is it that I am alone? Why does no one love me?
After a few seconds I hear him say, "I love you and I think you are perfect." You and I are like keys that are unique and can only open one certain door… Everyone else has a master key and they open all doors. At first the master key seems the most valued but I would say the opposite. If there is a key that is unique then that door becomes unique… You're the key that opens my door. You are perfect to me and I wouldn't want you any other way."
Just then I have to return to the world that is school. As soon as I am in that reality I think about the night time where I will have Alan all to myself again in my dreams. Too bad he only exists in my head, but could a person like Alan exist in the real world? If he does I can't wait to meet him one day…
-Q
This powerful narrative describes Q's imaginary, caring partner, "Alan" who comes to her each night in her dreams. He accepts her for who she is, a person with a disability. He understands her needs and is consistently there for her. The writer can be her true self with him. She contrasts this with her waking days which are a struggle to find her identity in a world where she feels judged. She also asks the question "why?" as she is looking for an explanation for her life course of events. The themes that emerge in this narrative are congruent with those of the majority of the young women.
Future
I want to know my future
find out my dreams
and what's ahead
I want to know my future guy
Is he strong?
Is he understanding?
Can he cook?
I want a guy who can be truthful
and helpful…
I just hope my future will come true and last long
These are my Dreams
I dream of having a nice beach house
and a piano right next to the windows…
then my future guy makes his entrance
and asks me what I want to eat
since it's my birthday, he gives me a ruby ring!
it's a lovely ring I must say,
….and what a nice Dream
-A.B.
This poem conveys the hopes and desires that AB (and the majority of young women) has in her life. They are similar to what most teenage girls aspire to achieve (a caring partner, a beautiful home, meaningful, material possessions). However, the young women often times seem to 'dream' of this future with a strong feeling that it is just that, a dream that will not become a reality for them.
First Day at my Pediatrician's Office
Setting: The pediatrician's practice on Dr. S's first day of work
Characters: Dr. S (the YWP-TSP participant, a new pediatrician with a physical disability), D (6 year old male patient), D's mother, Nurse, A (16 year old female patient with a physical disability)
Dr. S: (walking into crowded waiting room) Excuse me, I am very sorry that I am late today on my first day as a doctor. I don't want to give you the wrong impression and have you think that I don't care about my job. I had a problem with the para transit service as they didn't pick me up on time. Please just sit tight for a few minutes. The nurse will be out shortly to begin calling names.
D: (to his mother): Mommy, why does the doctor have crutches?
D's Mother: (to her son) I don't know honey, but it isn't polite to stare or ask silly questions like that. It is okay if some people look different from others. Everyone is special and different in their own way.
D: You're right mommy. I'm sorry.
D's mother: It is OK. Just think before you speak and remember to treat her the same way you treat everyone else.
…
[D. did a great job in Dr S's office and did not make any comments about her disability. Also, his health was excellent.]
D's mother: Dr. S., I would love it if you could come to my son's school and give a talk to the students about how people can look different and that it is OK. I think it's important that children learn this at a young age not to be judgmental and treat people the way they want to be treated.
Dr. S: Sure, I would be more than happy to. Please take my card and give me a call so we can discuss the details.
…
Nurse: (to the people in the waiting room). Is A here?
[A short, skinny girl with crutches walks up to the nurse]
A: (in a low voice) I'm A.
Nurse: (repeating herself since she didn't hear A): Is there someone here by the name of A?
A: (in a loud, irritated voice that everyone could hear) Yes, my name is A!
Nurse: Oh I am sorry I didn't hear you the first time but there is no reason to get angry about it.
A: (yelling at the Nurse) You know that I have every right to be mad. I am missing school right now to come to this doctor's appointment. My schoolwork is very important to me and I hate to miss a day for no reason.
Nurse: I'm sorry honey but seeing a doctor regularly to check your health is extremely important. Now please go into the room on the left. The doctor will be with you shortly. She is a young woman who uses crutches. She is the understanding type so maybe you can talk to her about the bad feelings you are having now.
[The doctor enters the room just before A is about to yell at the nurse for comparing her to some random woman that she doesn't even know just because she has crutches.]
Dr. S: Hello, my name is Dr. S. Can you tell me a little about yourself?
A: Well, there's not much to say except the fact that I am a short, skinny disabled 16 year old that nobody likes.
Dr. S: How dare you say that about yourself! One thing you must know about this doctor's office is that saying bad things about yourself or someone else is not allowed.
A: It's the truth though. That's all people ever see in me. Nobody ever sees me like a normal teenage girl.
Dr. S: Honey, that's not all that people see in you. You just make yourself think that way. I would tell you to stop worrying about what everyone thinks of you but I know that won't happen. That's all you teenage girls think about! It's funny that you mention this though because I used to be the exact same way. Sometimes it's not easy being a teenager with a disability… Here is my card. Please call me if you want to talk more.
A: Sure, that would be great. I could sure use some advice from someone like you. Thank you for taking the time to listen to me.
Dr. S: No problem, A. Don't forget I was once your age and if I made it, then so can you.
[Dr. S's first day as a pediatrician was unforgettable; especially her experiences with D and A. Dr. S did give a presentation at D's school which she enjoyed. A. did call her and Dr. S shared her experiences as a teenage girl with a disability. A. found it helpful and it made her feel better.]
-A.S.
Participant AS writes a screenplay that portrays an enactment of what many of the young women experience during their frequent visits to their pediatrician's office (and in life); that they are placed in a general disability category and not viewed as a person with feelings and life goals. It is telling that the program participant is the pediatrician, which demonstrates that she has a respected career and is in the position of power at the medical practice. The writer also describes the obstacles that she as the pediatrician, a working professional (and others with physical disabilities) often faces in mainstream life (here, being delayed due to a para transit issue). The character A is actually how participant AS sees herself now "a short, skinny, soft spoken, disabled, 16 year old that no one likes." However, ultimately the writer chooses positive outcomes for the interactions which displays her hopefulness for future change—D does not judge Dr. S; Dr. S speaks at D's school to heighten awareness and understanding of persons with disabilities and Dr S is able to counsel A and serve as her role model.
Conclusion
The young women are asked to complete an anonymous evaluation of TSP during the last session. This feedback assists with the planning of future workshops. Many have indicated that they thought they improved their writing skills, speaking skills, creativity, self-expression and socializing though the workshop. The young women state that having the opportunity to exercise verbal and written self expression, learning from the facilitators/mentors, and applying what they learned to their everyday lives are key elements to the success of TSP. Many comment that they feel safe in the sessions because all of the feedback is positive and even though the process is therapeutic, it doesn't feel like therapy. All participants responded that they would enroll in the workshop again if it was offered and many have done so.
The most powerful affirmation of TSP's success comes from the words the young women use to describe their experiences.
I made many new friends through (TSP) and learned that other people are going through similar experiences as me. It feels good to be able to let it all out in a safe place.
I never knew that I could do this (write and share my writing). This (TSP) pushed me to reach deep inside myself and pull out my feelings which I've always kept suppressed.
The attendance in all of the workshops has been consistently high. The workshop enrollment increased from 6 initial participants to 10 for the next two workshops which is the maximum. One factor that influenced this increase was the promoting of TSP by the young women to their peers directly. Most of the young women have reached out to their network of peers and facilitators in between sessions. The young women reported that they were able to open up more honestly with each other and others outside the group. One participant comments: "I feel like I can confront others more easily now, especially my family, they have always protected me and never think I have an opinion."
One participant wrote a letter to the United States President in between TSP sessions and brought it in to share with the group. She has a seizure disorder with some cognitive and physical impairment, and is finding it challenging to find a job through her vocational placement program. Her letter expressed her strong desire to find employment and her disappointment in not feeling qualified despite the Americans with Disabilities Act. After presenting the letter to the group she stated, "I never would have been able to do this without all of you. You gave me the courage and hope to know if I advocate for myself something can happen."
The young women seem to take pride in having their notebooks as a place to write down any thoughts, feelings, ideas or experiences. One young woman who shared her writing notebook with her favorite high school teacher stated:
"I shared some of writing with Ms H and she liked my stories. She said it helped her to understand me better. She didn't realize I had so many strong feelings about my disability. She asked if she could hold on to my notebook so she can take the time to really read it. I told her she can have it overnight but then I need it back because I have to write in it."
Another participant stated, "As I was reading through my notebook after the workshop ended I realized what deep feelings I expressed. It (TSP) inspired me to enroll in a creative writing class at my college."
Some participants found that writing and sharing their writing offered a vehicle to communicate their voice. As the sessions progressed and these individuals felt understood and valued, they often took more risks with their writing. The facilitators/group mentors all agree that as the sessions progress, the young women become increasingly comfortable sharing their writing with the group and volunteered to go first. One facilitator/group mentor commented, "At the beginning many of the girls seemed afraid to open up. They felt vulnerable, as many of them always have in school and other peer activities. Once the group crystallized and they realized that everyone here listens and doesn't judge, their writing became more fluid and the challenge was deciding who was going to share first."
The facilitators/group mentors identify the themes that emerged in the sessions (described in Writing Exercises section) which seem to be evident in most of the young women's writing and verbal sharing and are aligned with findings in the literature.
Discussion
The purpose of this article is to share the TSP, one of the expressive arts components of the YWP and to demonstrate how powerful the written and verbal forms of self expression are for young women with physical disabilities. The narratives of these young women describe their inner thoughts, feelings, ideas, struggles, hopes and desires. The theme of their desire to be viewed as individuals first, and not identified by their disability is paramount. Their testimonials about participating in the project indicate that they found it to be a transformative experience that helped them achieve a higher sense of self. This interactive journaling process where participants assume a full partnership in journaling, conveys trust and encourages members' sense of authorship for their own change. This egalitarian approach often harmonizes with the goals of an interpersonal growth group whose purpose is developments—self-disclosure, personal risk taking—focusing on the here and now, with a flow of interpersonal exchanges that extend nourishment and growth to support all participants (Parr, Heberstroh, & Kottler, 2000).
The TSP helps participants realize that others with physical disabilities share similar life experiences and from this connective power they gained self-confidence and heightened self-esteem. They feel that they have a voice and it counts. By allowing the young women to voice their stories, to share them in a protective milieu and then to evaluate them, it helped them to take ownership and responsibility for their experiences. Ultimately participants use that sense of ownership and acknowledgement of their own inner agency as a means to survive (Shalhoub-Kevorkian, 2005).
The TSP is also an altering and educational experience for the facilitators/group mentors. They are able to take these young women on this journey and observe their personal and collective growth during the two months together. The facilitators/group mentors gain insight about what being an adolescent/ young adult with a physical disability is like. They realize that through writing and sharing in a safe place, TSP provides valuable insights into the common life issues that these young women with physical disabilities face and try to navigate. It allows the young women to explore how they can bridge the gap that exists between the two worlds of "able-bodied" and those with physical disabilities. The current lack of fit between the two emphasizes the need for programs such as TSP.
Over the course of several workshops the TSP was expanded from 6 to 8 weekly sessions and from 1.5 to 2 hours which each allows for more writing and sharing time. In the future, we would like to add other workshop components, such as pairing participants with adult writing mentors who can offer guidance with home writing assignments in between workshop sessions and beyond the workshop. We are also planning for future workshops to culminate in a salon performance where participants read their stories to a select audience, perhaps all of the YWP participants, which will foster more confidence in their writing and speaking abilities, instill a sense of overall achievement and an expression of truth through character and story. Some of the young women expressed a desire to create a book of their select writings as a way to capture and share their experiences with others.
Masters only of their own reactions, emotions and inner power, they could control little more than their ability to share, support, reflect and gain insight. Participants came to recognize the power that underlies laughing, being with others, deep breathing, writing and sharing that writing. These discoveries increased the young women's understanding and group's strength; developing voices within those formerly muted enabled these young women to speak to, against and with power.
Works Cited
- Antle, BJ. (2004). Factors associated with self-worth in young people with physical disabilities. Health and Social Work, 29(3), 167-173.
- Blum, RW., Resnick, MD., Nelson, R., & St. Germaine, A. 1991. Family and peer issues among adolescents with spina bifida and cerebral palsy. Pediatrics, 88(2), 280-285.
- Bryan, DP., & Herjanic, B. (1980). Depression and suicide among adolescents and young adults with selective handicapping conditions. Exceptional Education Quarterly, 1:57-65.
- Canner Hume, S., & Hitti, J. (1988). A rationale and model for group art therapy with mentally retarded adolescents. American Journal of Art Therapy, 27(1): 2-12.
- Clements, CB., & Clements, RD. Art and mainstreaming: art instruction for exceptional children in regular school classes. Charles C. Thomas Publishing Co. 1984. Springfield, MA.
- Creadick, TA. (1985). The role of expressive arts in therapy. Journal of Reading, Writing and Learning Disabilities International, 1(3), 55-60.
- DiCowden, MA. (1987). Therapeutic art programs around the world XIV: art therapy: a therapeutic tool in pediatric and rehabilitation programs. American Journal of Art Therapy, 26(2), 52-56.
- Dunkley, TL., Wertheim, EH., & Paxton, SJ. (2001). Examination of a model of multiple sociocultural influences on adolescent girls' body dissatisfaction and dietary restraint. Adolescence, 36(142), 265-279.
- Erickson, J. (1979). The arts and healing. American Journal of Art Therapy, 18, 75-80.
- Johnstone, K. Impro: Improvisation and the theatre. Routledge. 1987. New York, NY.
- Kerouac, J. (1959). Essentials of Spontaneous Prose. In: Chaters A (Ed.), The Portable Beat Reader. 1992. New York (NY): Viking.
- Lynch, RT., & Chosa, D. (1996). Group-oriented community-based expressive arts programming for individuals with disabilities: participant satisfaction and perceptions of psychosocial impact. The Journal of Rehabilitation Medicine, 62 (July-Sept).
- National Center for Youth with Disabilities. (1995). Transition planning for the twenty-first century: A call to action. Minneapolis, MN.
- National Information Center for Children and Youth with Disabilities (NICHCY). (1990, Oct). Having a daughter with a disability: is it different for girls? Retrieved January 20, 2008, from, http:// www.nichcy.org/pubs/outprint/.
- Nelson, M., Ruch, S., Jackson, Z., Bloom, L., & Part, R. (1992). Towards an understanding of families with physically disabled adolescents. Soc Work Health Care, 17(4), 1-25.
- Nosek, MA., Hughes, RB., Swedlung, N., Taylor, HB., & Swank, D. (2003). Self-esteem and women with disabilities.Social Science and Medicine, 56, 1737-47.
- Omizo, MM., & Omizo, SA. (1988). Intervention through art, Academic Therapy, 24(1), 103-106.
- Parr, G., Heberstroh, S., & Kottler, J. (2000). Interactive Journal Writing as an Adjunct in Group Work. Journal for Specialists in Group Work, 25(3), 229-242.
- Piotrowski, K., & Snell, L. (2007). Health care needs of women with disabilities across the life span. Journal of Obstetric, Gynecologic and Neonatal Nursing, 36(1), 79-87.
- Powers, LE., Turner, A., Ellison, R., Matuszewski, J., Wilson, R., Philips, A., & Rein, C. (2001). A multi-component intervention to promote adolescent self-determination-take charge field test-statistical data included. Journal of Rehabilitation, 67.
- Powers, LE., Wilson, R., Matuszewski, J., Phillips, A., Rein, C., Schumacher, D., & Gensert, J. (1996). Facilitating adolescent self-determination: what does it take? In: Sands DJ & Wehmeyer ML (Eds.), Self-Determination across the life span: independence and choice for people with disabilities (pp. 257-284). Baltimore (MD): Paul H. Brookes.
- Scal, P., Evans, T., Blotzis, S. (1999). Trends in transition from pediatric to adult care services for young adults with chronic conditions. Journal of Adolescent Health, (24), 259-264.
- Shalhoub-Kevorkian, N. (2005). Voice therapy for women aligned with political prisoners: a case study of trauma among Palestinian women in the second intifada. Social Service Review, (June), 322-343.
- Spolin, V. Theater games for the classroom: a teacher's handbook. Northwestern University Press. 1986. Evanston, IL.
- Stevens, SE., Steele, CA., Jutai, JW., Kalnins, IV., & Bortolussi, JA. (1996). Adolescents with physical disabilities: some psychosocial aspects of health. Journal of Adolescent Health, (19), 157-164.
- Stewart, R. & Bhagwanjee, A. (1999). Promoting group empowerment and self-reliance through participatory research: a case study of people with physical disability. Disability and Rehabilitation, 21(7), 338-345.
- Tate, DG, Roller, S., & Riley, B. (2001).Quality of life for women with physical disabilities. Physical Medicine and Rehabilitation Clinics of North America. 12(1), 23-27.
- United States Department of Justice. Retrieved August 5, 2011, from http:www.ada.gov.
- van Campen C., & Iedema, J. (2007). Are persons with physical disabilities who participate in society healthier and happier? Structural equation modeling of objective participation and subjective well-being. Qual Life Res., 16, 635-645.
- Visible Theatre (2009). Mission. Retrieved January 14, 2010, from, http:www.visibletheatre.org.
